11 हज़ार बच्चों में से एक को होती है ये बीमारी

 

 

 

 

एक खुराक होती है 14 करोड़ की

कई बीमारियां ऐसी हैं जिनके इलाज में काफी पैसे खर्च हो जाते हैं। लेकिन फिर भी वह बीमारी पूरी तरह से ठीक नहीं हो पाती। अमरीका ( America ) के फूड एंड ड्रग्स एडमिनिस्ट्रेशन ( The Food and Drug Administration ) ने गंभीर किस्म की बीमारी स्पाइनल मस्कुलर अट्रॉफी (एसएमए) के इलाज के लिए जीन-थेरेपी को मंजूरी दे दी है। इस थरेपी को जोलेगेंस्मा नाम दिया गया। इस थेरेपी में करीबन 21 लाख डॉलर (करीब 14 करोड़ रुपए) का खर्च आएगा। इस थेरेपी को अब तक का सबसे महंगा इलाज बताया गया है। इससे पहले एसएमए के इलाज के लिए कई ड्रग्स विकसित की गई थीं। इनके एक डोज़ का खर्च लगभग दस डॉलर होता था।

स्पाइनल मस्कुलर अट्रॉफी एसएमए की बात करें तो यह एक तरह का न्यूरोमस्कुलर डिसऑर्डर है। इसमें बच्चे की शारीरिक क्षमता झट जाती है। शोध में यह बात सामने आई है कि 11 हज़ार बच्चों में से एक ही इस गंभीर बीमारी से ग्रसित होता है। इससे पीड़ित बच्चा चल-फिर नहीं पाता है। कई केस ऐसे भी आए हैं जिनमें बच्चे की मौत 2 साल की उम्र तक हो जाती है।

बता दें कि एसएमए के इलाज में अब तक स्पिनरजा नामक दवा का इस्तेमाल हो रहा था। इस दवा का खर्च करीब 40 लाख डॉलर (करीब 27 करोड़ रुपए) पड़ जाता है। जोलेगेंस्मा को विक्सित करने वाले शोधकर्ताओं का कहना है कि जोलेगेंस्मा के आने के बाद यह खर्चा आधा हो जाएगा। इस दवा को बनाने वाली कंपनी के सीईओ का कहना है कि, ‘हम सही रास्ते पर हैं और एक दिन इस बीमारी को पूरी तरह खत्म कर पाएंगे।जहां कुछ लोग इस इलाज ने विकास के बाद खुश हैं वहीं कुछ लोगों को चिंता है।

बच्चे पर सफल रहा ट्रायल

इस इलाज के ट्रायल के दौरान ओहायो की रहने वाली टोरंस एंडरसन के बेटे मलाची को इसका डोज़ दिया गया। मलाची एसएमए से ग्रसित थे। साल 2015 में मलाची चार महीने का था जब उसपर ये ट्रायल किया गया। आज वह चार साल का है। बाकि एसएमए पीड़ित बच्चों में से वह काफी स्वस्थ है साथ ही अपनी व्हीलचेयर भी खुद चला लेता है।

(साई फीचर्स)

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